CFSAC Public Comment, January 2017

I prepared comments for the January 13, 2017 CFS Advisory Committee meeting, but when my time arrived I decided to wing it. Below is my best reconstruction of what I said, a mixture of my prepared and spontaneous remarks.

Start as you mean to go on. This is a commonly used phrase at New Year’s – supposed to be motivational, I guess. It means: Be intentional as you begin the new year. Start reading more books or taking more walks or whatever your goal may be, because how you start influences how you will continue forward.

I’m going to take my own advice and toss my prepared comments. Based on the discussion this morning, I want to scream: Let’s. Start. Now.

Start by tossing what’s been done.

Start by thinking outside the box.

If you want to design better educational materials, if you want to recruit new investigators, if you want to progress a treatment to approval within a decade then it is time. It is time to roll up our sleeves, work hard and work together.

I’ve been an activist for close to two decades. We have got to do something different in order to achieve different results. It’s time to ask how we can achieve the results we want, instead of following the same paths and procedures that are entrenched in the system.

There is so much uncertainty about the future budgets for research and assistance programs, and ME patients are extremely vulnerable. Many are wholly dependent on SSDI, Medicare and Medicaid. All of us  – including all of you in the room who have a different disease or health condition – rely on the protection of the pre-existing condition rule to obtain health insurance. The vast majority of patients with ME have great difficulty getting appropriate diagnosis and care, and do not have access to the handful of specialists nationwide. And our future is very much dependent on full funding for NIH in general, and ME research in particular.

If we don’t do this, then I am worried. We are losing people with ME to suicide because they are too sick to go on. Efforts to help us are too slow and too small and too easily ignored. Promising scientific ideas gather dust while we wait for funding, and the ME researchers and clinicians alike are having difficulty finding experts to replace them as they retire out.

If we don’t do this, then I am scared. I am scared that I will recite variations of this litany year after year, as I get older and the last of my supposedly productive years leach away.

Let’s demonstrate forward thinking leadership, and set a high standard with which to measure federal agencies’ performance. Let’s sit down at the table, as equals, and quickly. We need to take ACTION. I have volunteered for every stakeholder engagement initiative I can. I am ready and willing to work with you for solutions. This is the only way I see to create a better future for people with ME.

This entry was posted in Advocacy, Commentary and tagged , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

20 Responses to CFSAC Public Comment, January 2017

  1. Patricia Hirst says:

    Thank you again, Jennie for finding the words for all of us. I read what you say, and what you write…it’s as if I were saying it myself!!! 🙂 You are the best advocate ever, thanks for all you do. If the NIH, CDC, and others don’t get off their collective butts and start actually putting their money where their mouths are , we will just keep spinning wheels and lose more and more lives to this and other “invisible diseases”.

  2. Tillie Clapp says:

    Thank you for your work!

  3. Chris Heppner says:

    Jennie, terrific–we will have to wait and see what response comes. Jennifer Brea’s Ted talk hit the waves yesterday, now this–two great Jennifers doing their very best to improve our situation–but the NIH seems to have a very stony heart and mind, alas. I do wonder a bit about the possibilities of triggering action from the President to be–he has shown a willingness to confront the Big Pharma side of the medical establishment by appointing a Kennedy to head a look at what is really going on with vaccines, and by making noise about drug prices–just wonder if he could be persuaded to put some fire under the NIH? Probably not…..

    Anyway, a great and brave challenge to a moribund bureaucracy, whatever the result. It had to be said, and you went and actually said it! Bravo!

  4. Bazia says:

    Absolutely! Let’s get it done!!
    Thanks for your commitment and energy!

  5. Sharon R. says:

    Thanks Jennifer, followed pre-launch Q&A and good luck with Sundance. I hope you share the #1 priority of defining subsets and using one preferred diagnostic protocol like CCC. Research will continue to struggle and research dollars wasted if we don’t advocate these priorities, otherwise we are apples and oranges.. Godspeed.

  6. Pat says:

    Thank you for your hard work. It is so greatly appreciated that words do not do justice.

  7. LEE-ANNE DU PLOOY says:

    The more I read, the more my eyes welled with tears. Well said!!! Thank you. I recently watched Ryan Prior’s documentary on iTunes, Forgotten Plague, telling the story of ME. How can anyone from NIH (or anyone for that matter) watch that movie and not say “why are we NOT doing something NOW?” So many lives slipping away. I’m so tired of them talking about funding and planning to fund, instead of just doing it! Whether your raw truth will be enough to make them realize the time is NOW, well, we’ll see. But it needed to be said and I am so grateful you did.

  8. Carollynn says:

    Thank you. And thank you for the courage to be spontaneous! that’s really hard, especially when you most certainly agonized over what you were going to say with long prep. With all the work you’ve done for yourself and our cause, you will always knock it out of the park, even if off the cuff. I’m so grateful for your presence.

  9. Allison Haynes May says:

    Thank-you so much Jenny, for being on the front lines advocating for us. Very much appreciated. (M.E. since 1989, and too sick to do any protesting in person.)

  10. Joanne Tatum says:

    I agree- we can’t keep doing the same things if it gets us nowhere. I have been doing grassroots education with everyone I know. I tell family, friends, and co-workers. (My daughter and husband have ME.) If people knew it was such an injustice, public opinion can change things. Word can spread quickly. I am praying that UNREST, the movie wins awards- big time!!! We SO need the exposure! I would LOVE to embarrass, if need be, the medical community, NIH, HHS, and etc. into action! We have to keep tweeting and emailing our politicians and others. Whatever we can think of, be relentless! Some say we will offend people. I say the truth is bad enough, without being rude. The pictures of bed ridden patients saying “We are waiting. Don’t let us give up!” are already beyond awful… Thanks for being there, Jenny!

  11. jimells says:

    “We have got to do something different in order to achieve different results. It’s time to ask how we can achieve the results we want, instead of following the same paths and procedures that are entrenched in the system.”

    I couldn’t agree more. That’s why I keep trying to promote the idea of legal action.

  12. Marc Simon says:

    Looks like things are heating up for Mr Collins at the NIH:

    I wonder if he will last as director . . .

  13. Kathy D. says:

    Thanks Jenny for doing this and for all your hard work. Your spontaneous talk was excellent.

    I wouldn’t bet on the next president. He is interested in helping millionaires and billionaires. Just look at his appointees. Tom Price, his nominee for head of HHS wants to dismantle the Affordable Care Act.

    So, we have to rely on ourselves, doctors, advocates, friends, relatives, researchers.

  14. I spent today wishing I could be at one of the Women’s March events – and not being able to do it because there isn’t enough energy to even get to the starting point.

    I’m glad you were able to make the effort, and thank you for using your energy for the benefit of our community.

    I hope someone was listening to what you had to say – it would be a real loss not to make an impact somewhere, given what it must cost you.

  15. Thank you, Jennie, for your unwavering support. May those who need to listen hear your voice as you speak for so many.

Comments are closed.